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What to do?? Open heart surgery? (LONG)

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  • What to do?? Open heart surgery? (LONG)

    A few weeks ago I finally got DH to go to a cardiologist after complaining of shortness of breath for a month or so. We knew he had a murmur but it hadn't been checked in many years. So the MD has an echocardiogram done, and tells my husband he has an aneurysm in his aorta at the root (by the heart) and that it is very dangerous and he has to see a cardiac surgeon right away. He ordered an MRA test which confirmed that he has a 5cm aortic root aneurysm and a bi-cuspid aortic valve (a birth defect) which is leaking which may be causing the shortness of breath (SOB). A week later we see the surgeon who says that 5 cm is not that big of a deal, that it is not emergent and can just be watched. She also said that the degree of leakage does not appear to be enough to cause the SOB DH is experiencing. She wants him to take a few more tests to see if something else may be going on to cause it. One of the tests is a stress test.
    So we go back to the cardiologist yesterday who says "a stress test?? There is NO WAY I'm putting you on a treadmill with that aneurysm. It's too dangerous. He tries to call the surgeon but she's in the OR and can't answer. Then he calls a cardiothoracic surgeon that he knows from a hospital with a good reputation for heart surgery on Long Island. The surgeon agreed to see DH this morning.
    Meanwhile, we get home and I call 2 people I know who have experience with this surgery. One told me he had a 5 cm aneurysm for 5 years and they just watched it. When it grew to 5.3 cm, they recommended the surgery. The other friend told me the criteria for repair used to be 6.0 cm, but is now 5.0 cm. Her DH had an undetected aneurysm which ruptured, with a poor outcome. DH is saying Goody I have 5 years before they cut my chest open.
    DH went to the surgeon this morning, MD reviews the films and tells him that 5.0 cm is the borderline but because he has the deformed valve, he should have the surgery (valve replacement and aorta repair) because the bicuspid valve makes the aneurysm more dangerous. He told him that he would do a cardiac catheterization before the open heart surgery to see if ther are any other causes for the SOB, instead of a stress test. Now DH is upset because he thought he had 5 years. The MD tells him to get an echocardiogram at 1pm, which he does. The supervisor of the echo staff asked him why he was there. He told her the story and she said "Does he really want to operate on this? Your aneurysm is only 4.7 cm and they usually just watch this. You can come here twice a year and have it checked".
    So DH is feeling he is on a roller coaster and of course he does not want to have open heart surgery but he does not want to be a walking time bomb either. I suggested he get even a 3rd opinion and he just sort of growled at me. Plus he has been told he cannot run (he runs 3 to 4 miles/day) or lift anything heavier than 10 lbs while he has the aneurysm. This will change his life and he doesn't know if that is worth it either.
    Any information anyone has on this topic would be greatly appreciated. Thank you.
    Jacki

  • #2
    Jackie,

    I am going to ask DW to read this. She used to work at the Cardio - Thoracic Dept at NS/LIJ.

    We can give you the name of the Chairman of the Cardio- Thoracic Surgeon at NS/LIJ.

    Dr. Alan Hartman. He is top notch and well respected. If you need a 3rd opinion he is the man.
    Flying at MACH4 +

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    • #3
      Thanks Bill. The 2nd opinion today was at NS-LIJ. The Dr.'s name is Robert Kalimi. Maybe your wife knows him also?
      Jacki

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      • #4
        oh Jacki!

        I don't know if I could live with that hanging over my head for 5 years! What if? and the younger the easier to recover no? Why take the chance?

        Good luck. I know you'll seek the best advice regarding this. It is not like the surgeons at LIJ are slackers.
        Lawren
        ------------------------
        There are many wonderful places in the world, but one of my favourite places is on the back of my horse.
        - Rolf Kopfle

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        • #5
          Originally posted by jackio View Post
          Thanks Bill. The 2nd opinion today was at NS-LIJ. The Dr.'s name is Robert Kalimi. Maybe your wife knows him also?
          Yes we she knows Kalimi. He has expertise with Aortic Aneurysms. He had treated a patient a few years back that had symptoms of an Aortic Aneurysm similar to what actor John Ritter passed away from so suddenly. Dr Kalimi was the hero of the day, and was in Newsday for saving this persons life on the spot!

          I would take Dr Kalimi's advice very seriously. You are in the right place and in good hands. Dr Kalimi is in the same office as Dr. Hartman. They collaborate all the time.
          Flying at MACH4 +

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          • #6
            Jackie, I don't have any advice--just for you and your DH. Good luck in making your decisions.

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            • #7
              How frustrating - maybe MD 2 - who Billy's DW knows - could look at both echos and determine the actual size before proceeding - I know this is such a worry - and it doesn't seem like a good option for DH to have to curtail his activity for 5 years and have to have the surgery anyway???

              Pat
              *** My Website ***

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              • #8
                Jacki,
                No advice here. DH has had open-heart surgery twice and we both survived.

                Good luck to both of you.

                Nancy

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                • #9
                  Jackie,

                  I don't have any advise to offer, but wanted to wish you the best of luck with your decision. Maybe a 3rd opinion is the way to go. Or, maybe a consultation with Dr. Hartman.
                  Angela

                  If you change the way you look at things, the things you look at change.

                  BTW, I'm still keeping track of how many times you annoy me.

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                  • #10
                    All frightening. I'm no help, just sending good thoughts your way. I know you will come to the best decision and then tell DH what it is

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                    • #11
                      Little advice, just sending strength for making the difficult decision.
                      I think that taking "quality of life" into account is important.

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                      • #12
                        Tough times....but it sounds like you have excellent physicians. It is nerve wracking to be a nurse and have a loved one with major issues. How did you know so many people with prior history of cardiac aneurysms. I will be praying for you both as you make the decision - that you will have a certainty in your heart as to how to proceed.
                        Keep us posted!

                        Marilyn

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                        • #13
                          I'm no cardiologist, but I'm capable of understanding their literature. Here's an excerpt from an article on this.

                          The 2006 ACC/AHA guidelines recommend surgery to repair the aortic root or replace the ascending aorta in patients with bicuspid aortic valves if the diameter of the aortic root or ascending aorta is greater than 50 mm or if the rate of increase in diameter is 0.5 cm per year or more [14]. A threshold lower than 50 mm is suggested for patients of small stature.

                          In some patients, repair of the aortic aneurysm becomes necessary before aortic valve repair is indicated. In such cases, the bicuspid valve is often replaced at the time of aortic surgery. However, preservation of the native valve has been attempted in some cases. This approach was evaluated in a series of 21 patients from the Mayo Clinic [66]. At a median follow up of 2.5 years, only one patient required repeat surgery for aortic valve replacement.

                          The 2006 ACC/AHA guidelines recommend that among patients with bicuspid aortic valves undergoing aortic valve replacement because of severe aortic stenosis or severe aortic regurgitation, repair of the aortic root or replacement of the ascending aorta is indicated if the diameter of the aortic root or ascending aorta is greater than 45 mm [14]. A threshold lower than 45 mm is suggested for patients of small stature.
                          You need to do what feels right to you, of course, but I think the critical thing to know is the exact diameter of the aneurysm. The gold standard (mentioned elsewhere in this article) is the MRA, so I would base your decision largely on that result. 50mm=5cm does seem to be the size at which mortality starts to increase somewhat. 5 year risk of rupture for aneurysms from 50-59 mm is about 16 percent (which of course means that 84 percent don't have a rupture). Remember that there is also risk inherent in open heart surgery as well as recovery time that must be taken into account.

                          If you decide not to pursue surgery at this time, be sure to be aggressive with medical management, including beta blockers for blood pressure. I'm sorry for your situation, and wish you luck and support in your decision.

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                          • #14
                            Jackie from what I have heard St Francis is the best heart hospital in NY. You may want to look further into them.
                            Timeshareforums Shirts and Mugs on sale now! http://www.cafepress.com/ts4ms

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                            • #15
                              Jacki, I can imagine how worried you are and hope for the best for your husband. It seems to me that you are in the hands of the best in this field and that is good. I wish you strength.

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